Seeing the beauty in genetic differences

When Sarah Kanney was younger, she developed a way to avoid the fact that people stared at her. She averted her gaze, witnessing the world largely by looking down.

Kanney was born with Sturge-Weber syndrome, which is often characterized by a congenital port wine facial birthmark. With each passing year in school, the stares became harder to bear and Kanney switched to homeschooling starting in eighth grade.

But everything changed when Kanney turned 20. She met photographer Rick Guidotti when they both attended a Sturge-Weber conference. He saw beauty in her rather than a defining genetic difference and asked whether he could do a photo shoot with her. Kanney was shy and self-conscious at first, but agreed.

When Guidotti showed her the resulting photos, she was shocked. They showed her someone beaming with radiant confidence.

“It was amazing to see him bring the happiness out of me,” Kanney said.

Kanney’s story is just part of the documentary, “On Beauty,” which follows Guidotti as he aims to transform the way people see and define what is beautiful. The documentary is screening now in New York City.

‘I saw beauty in other places’

“On Beauty” resulted in a chance encounter between director Joanna Rudnick and Guidotti at a conference. Rudnick had previously seen an exhibit of Guidotti’s work and admired the way he was able to help his portrait subjects shine.

A documentary evolved out of their desire to collaborate together and show the transformation of people with genetic differences as they celebrated and embraced their true selves.

“You really see Sarah come alive in that opening scene,” Rudnick said of Kanney’s photo shoot, captured in the documentary. “Her body posture changes. And to see her mom’s face — this is 20 years of the two of them trying to help her through it and finding a happy moment together.”

Guidotti’s background was in the fashion industry, photographing models such as Cindy Crawford and working with clients such as Revlon and Yves St. Laurent. He loved the art of photography, but not the restrictive world of the fashion industry.

“I was always told what was beautiful, but I saw beauty in other places,” Guidotti said. “One day, I left the studio and I saw this beautiful kid at the bus stop who had albinism. And I knew that she would be told she wasn’t part of the beauty standard.”

That day changed Guidotti’s life. He left the fashion industry and educated himself about genetic differences, seeking out stories to share and people to photograph. His research led him to stark medical textbooks filled with images of despair and sadness.

Part of Guidotti’s project, Positive Exposure, is to capture positive images of people with genetic differences to show medical students.

“It’s not what you’re treating, but who,” he said. “When I photograph people, I tell them to be themselves. They are not a diagnosis or a disease.”

Together, Rudnick and Guidotti hope that “On Beauty” joins the current conversations happening about the beauty standard while starting more dialogue about differences and how to embrace them. The goal of their documentary and Guidotti’s continuing photography projects aim to portray humanity and expand the parameters of what defines “beauty” as we know it.

“The public zeitgeist right now is trying to expand that lens on beauty,” Rudnick said. “Sarah walked through life looking down and we’re responsible for making people feel that way. We all have the power to not look at someone like a disease.”

The documentary, which was originally 90 minutes, was cut to a half hour to make it accessible and a way to begin dialogue — especially with students. They hope to screen “On Beauty” at schools across the country because feeling different and stigmatized is a universal issue, Rudnick said.

‘You have to focus on yourself’

Jenny Howe understands the stigma firsthand. When she was pregnant, it was discovered that her baby had Ring 18, a rare chromosome disorder. She was told that if her son even survived, he would be profoundly retarded, and that she should abort. Howe was 22 weeks pregnant when they showed her photos of dead babies.

Howe chose to keep her baby and named him Deak. After he was born, the doctors wouldn’t even let her hold him. They circled him, “like a freak show,” waiting for her to react with horror.

“All I saw was joy,” she said.

They encountered Guidotti at a Chromosome 18 conference when Deak was only one and Guidotti told her, “You have a beautiful son.”

“He looked at me and my son and he just saw us as people,” Howe said.

Howe is the 2015 conference chair for the Chromosome 18 Registry and Research Society. Before that, she worked as a psychologist for 15 years, working with kids who constantly told her that they felt judged for looking different.

She hopes that the positive imagery in “On Beauty” will change that for future generations.

It’s been six years since Kanney worked with Rudnick and Guidotti on the documentary and she feels like a new woman now at age 26. In that time, Kanney says she has gained self-confidence, grown and matured as a person, shed some of her shyness, lost weight and started returning the stares directed her way.

Kanney hopes that people with genetic differences can learn from her story and embrace who they are. “It’s hard working through all of your feelings,” she said. “But you have to focus on yourself, be happy and project it. Other people will see and feel that.”

Witnessing this kind of transformation firsthand is what inspires Guidotti and gives him hope for the future. “We need to have the freedom to see beauty in the world,” he said.